#ME Where Are We?

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A great question asked by Sunshinebright – #ME Where are we? A question I would like a great answer to.

M.E/CFS awareness -

Alas, I am doomed to be disappointed. As Sunshine pointed out, 2015 started out with a lot of optimism. M.E. was officially declared a real, physical disease by the IOM. This was a big win, as an estimated two million sufferers in the U.S alone, including myself, have been treated horribly by the medical establishment. M.E. had never been taught in medical school and doctors typically would “poo-poo” the symptoms effecting M.E. patients. We have been labeled as hypochondriacs and being mentally ill. The outcome of the IOM’s report would surely change things for the better – this was the hope. More research dollars to find a biomarker and, hopefully, a treatment that works (if not a cure.)

The truth: Doctors still have no clue what M.E. is. Money for research is still not coming from the NIH. Just this month, Dr. Ian Lipkin , a researcher, resorted to eating hot peppers in a challenge to raise funds. Very sad.

Don't be surprised...

Sunshinebright

During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis):  we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report.  The former was indicative of forward movement in the cause of ME and the latter, was not.

We’ve been ignored.

There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.

And where are we?  After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:

Where are we?

It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and…

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She Gives Hope To Other ME/CFS Patients

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A little bit of hope goes a long way. And Carol E. Head is the picture of hope.

Sunshinebright

Below is a video Carol E. Head, President and CEO of Solve ME/CFS Initiative.

Carol E. Head, President and CEO of Solve ME/CFS Initiative Carol E. Head, President and CEO of Solve ME/CFS Initiative

She talks about her “personal walk” with ME/CFS, describing how she became afflicted with the illness.

She had goals and plans for her life when she was a young woman who had just graduated from Management School at Stanford University.

Then, she got the flu.  And you can guess what happened after that.

After going from doctor to doctor to doctor, she did seek alternative therapists, and, over the course of many years, started to see improvement, to the point where she was able to go back to work.

Her story, told briefly in this video, is reminiscent of most of all sufferers with M.E.

It’s not a long story, but you will be able to empathize with her, and take hope that it is possible…

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The Beach That Love Built – GUEST BLOG

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When friends and family come together to support a loved one, the result is magical. This is heartwarming….

Kindness Blog

The Beach That Love Built – By Russ Towne

The Beach That Love Built

When our daughter was about 15, she was stricken with an “incurable” disease and nearly died. She spent about a month in the hospital, much of it in intensive care fighting for her life. She had to deal with an awful disease as well as many blood transfusions and the side-effects of the chemotherapy, steroids, and other harsh medications. She met each challenge, disappointment, and setback with courage and class.

Eventually, the disease went into remission and she began to dream of having a party and bonfire for her 16th birthday at the beach with her friends, relatives, and beloved dog Ginger. It took quite a bit of searching, but we finally found a beach that had all the necessary attributes including allowing dogs and bonfires, and with easy to access for elderly relatives.

A week before her party, the disease flared…

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amigurumi crochet tiny owls

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A family affair! Mother and son create adorable crafty critters to raise funds for charity!

gentlestitches

a parliament of amigurumi crochet owls
A parliament of welcome owls getting ready to head off to THIS FETE on April the 5th.  All proceeds go to the Aussie Asylum seekers resource center.  small amigurumi crochet owls.Check out the new Creating a Welcome page and download the pdf pattern to make your very own welcome owl here or at my store at ravery.
These owls were inspired by knitted owl puffs by Jenna Krupa and her pattern can also be found on ravelry.
wooden bead ants in a basket These welcome ants, made by my son will also be available at the fete and although Australia is a great country, we do seem to have more than our share of ants. These ones are friendly though and don’t bite.

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